Liability trumps dignity and common sense for people dealing with disability bureaucracy

The institutions are back; they are four bed waiver houses, only now, the walls are invisible. My sons, own their own home. They are making monthly mortgage payments, and their names are on the contract. However, the provider that serves them feels that it is in their best interests to be known by a number instead of a name. If their record book goes to the doctor’s office, it has a number on it, not a name. Ted is 018B and Jim is 018G.

Minnesota has done a good job in closing down large institutions, but we haven’t been nearly as successful in closing down institutional attitudes. Indeed, institutional behaviors and attitudes are lingering in large part because of liability issues, especially the many interpretations of HIPAA (the data privacy law).

How’s this for institutional déjà vu? Back in the 50s, people living in institutions were numbered. Your grave marker was a number. You always knew when you were looking at pictures of people with disabilities in the media; they were the ones who had the black bars obliterating their faces. No name, no face, no identity. Recently I received an e-mail regarding my son’s annual meeting. He was referred to as 018B. Well guess what? 018B has a name: Ted Erickson. And his brother is Jim. It is not OK to reduce them to numbers to appease a HIPAA rule.

Here’s another example. About 1995, Arc Southwest and a few service providers participated in a grant to expand community involvement for people with disabilities. The goal was to support people in joining a service organization. Recently we participated in a follow-up survey. Naturally, we wanted to interview the two people who continue to be involved with the organizations they joined. To our surprise, one provider agency would not let us talk to a woman regarding her involvement unless there was a signed consent form on file from her guardian.

When did people with disabilities lose their right to free speech? When we started this program, it was people helping people. Nowadays, we require signed consent forms, background checks and proof of insurance coverage before our neighbor can even offer to give us a ride to church. Heaven forbid that you ever become friends with someone from another agency. You would not be allowed to ride in their company vehicle, and they couldn’t ride in yours. Liability, you know.

And then there’s the issue of choice. I remember working with Cliff Poetz of People First Minnesota to put on workshops entitled “It’s Your Meeting.” People with disabilities were encouraged to take charge of their annual meetings and told they could invite anyone. Now, advocates and friends are being challenged if they show up at a meeting, even when they have been specifically invited by the person with a disability. We have t-shirts that say “It’s My Choice.” Wrong. It’s the guardian’s choice. The guardian has to okay anyone else attending your meeting. I guess that makes it the guardian’s meeting.

When did we lose our focus on people and put it on liability issues? And why are we allowing this change to happen? It is past time for people with disabilities and those who support them to recognize this threat to quality of life and work together to get back on track.

Lee Ann Erickson is program director at Arc Southwest (Minnesota).